CRESTVIEW — Madison Baxley is turning 5 years old on Sept. 30.
“It’s a big deal,” her mother, Ashley, said. “Even before she was born, she wasn’t expected to make it.”
Madison has Turner syndrome, a chromosomal disorder that affects growth and can result in a wide neck, hearing loss, visual impairment and irregularities with the heart, liver and kidneys, according to the Turner Syndrome Society of the United States website.
The disorder itself — which is present in one of 2,000 female births, according to the society's website — typically isn't life-threatening, but complications can be.
Madison was just 9 days old when she received open-heart surgery in Atlanta, Ashley said.
Madison, at 4, still struggles, but her mother is optimistic.
“She has done pretty well so far,” Ashley said.
The family spreads awareness by wearing Turner syndrome T-shirts and supporting Turner Syndrome Family Fun Day, set for Sept. 27 at Old Spanish Trail Park.
The event will feature children’s bounce houses, a video game truck, face painting and live music. Wrist bands, lunch plates and snacks will be sold for donations.
In addition, residents dealing with the disorder will be on hand to share insight, Ashley said.
Most of the event's proceeds will assist with Madison’s medical expenses. Twenty-five percent will benefit the Turner Syndrome Society of the United States, Ashley said.
In addition to weekly physical and occupational therapy sessions, Madison soon will need another open-heart surgery, along with a neck procedure, Ashley said.
Having Madison in her life has given Ashley purpose in spreading awareness for Turner syndrome, she said.
“I never knew what my calling was until I had her,” she said.
WANT TO GO?
WHAT: Turner Syndrome Family Fun Day
WHEN: 11 a.m. to 4 p.m. Saturday, Sept. 27
WHERE: Old Spanish Trail Park, corner of Industrial Drive and Stillwell Boulevard, Crestview
COST: $5 per wristband, $5 for barbeque plate and $25 for family of four package (including two children's wrist bands and four lunch plates)
Email News Bulletin Staff Writer Matthew Brown, follow him on Twitter or call 850-682-6524.
This article originally appeared on Crestview News Bulletin: Woman spreads Turner syndrome awareness following daughter's diagnosis